Unnamed & Unknown | Understanding Disability Day of Mourning (DDM) Part 1

From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.

 This is the first of three sessions about Disability Day of Mourning, held annually to remember those with disabilities who’ve died at the hands of caregivers.

Join us on March 1 as we travel to two cemeteries in Ohio; you can find the details on our event page, March 1.

Nancy Fuller, Family Mentor: My friend Tim and I were starting to make this unusual habit of exploring odd places such as cemeteries. It was kind of a cold, damp December morning, and Tim agreed to meet me at a new location I found on the internet right in our own backyard, and it was called Longview Cemetery. It was hidden behind some apartments.

It wasn't easy to find.

As we approached together, I had the same sinking feeling that we had experienced before. We approached a black iron gate with a padlock. It reminded me of a prison, which is a them that seems to keep repeating itself. What we found on the grounds was sadly familiar. It was quiet, it was cold, and there were no gravestones revealed.

After a thorough search of walking the grounds, we did find a small statue. With a marker, and that only had a number on it, not a name. It was number 768. No one here was named or known.

Robbie Jennings Michels: Welcome to Starfire's Podcast, More. Starfire works alongside people with developmental disabilities to discover interests and ways to share their gifts, to spark connections that break down the barriers of social isolation to build richer, more fulfilling lives in a more inclusive world.

And we do this work through our Community Builder Network, our Family Leadership Network and our Learning Network. In this three-session podcast Starfire Leadership Network director Tim Vogt, Family Mentor Nancy Fuller and Family Leaders Cassandra Clement Melnyk and Nester Melnyk will share some of the history of disability day of mourning, which commemorates those killed at the hands of caregivers.

They'll talk about the importance of recognizing the gravity and the truth of this history, and sadly, the behavioral patterns that continue today. Hopefully we'll learn how reconciliation can lead to healing our culture and the ways that everyone can get involved. So today's session is called Unnamed and Unknown Understanding Disability Day of Morning.

Caution: The content you're about to hear describes some treatment of people with disabilities, and it can be alarming and graphic, but if we don't discuss the history, we can't work together to make sure it won't be repeated.

Tim, please start with talking about why you and Nancy are crashing cemeteries – and why that's so important.

Tim Vogt: Thanks, Robbie. Appreciate that question. It does date back a few years and it starts out of our story at Starfire, which a lot of people listening may know, We started with successful day programs and outing programs, and we were rocking and rolling. This would be from 1993 to 2010, and as the director back then, I started to really understand the patterns of isolation around people with disabilities.

And one of those really formative experiences I had was in talking to people, people with disabilities that were coming to outings. They were coming to our day program and some of them, if they were older, would mention that they had lived in Orient. I can remember a conversation that I had with three people with disabilities and we were sitting down and we were actually on a trip that Starfire had taken.

We were sitting down and, and just relaxing and talking about how great the hotel room was and the pool at the hotel. And these three people started talking about how much they loved it, but also they said the worst place that they ever stayed was Orient. The first guy talked about how he had lived there pretty much his whole life when he was dropped off by his parents and he just said it smelled, it was terrible.

Nobody ever talked to him. The woman that responded to him told us about how she would spend most of her day just sitting in a room by herself staring out a window. And probably the most vivid example was another gentleman that was sitting with us and, and he didn't have any teeth. He told us that he had had his teeth yanked out when he lived at Orient.

I was shocked. I was like, you mean they took your teeth out? And he said, yeah. He said, ‘I was biting.’ And so their solution to that was to yank his teeth out. The first time I ever heard the term Orient as a place that people were living in, it was heartbreaking, you know? And so I started to understand that that was what the general culture would call an an asylum, right?

I had heard ‘asylums.’ You hear it around Halloween time and you hear it in movies and TV shows. But I didn't quite understand what they were and so I, I was like, oh, this is what an asylum was right? In our field. I would start to hear it called institutions and I would start to hear, we moved everybody out of the institution seventies and eight.

So I was really curious about that because remember I was, I was noticing Starfire's pattern of separation and segregation in our programs, and I was starting to wonder, other patterns and that those institutions kind of got me really curious about that.

Robbie: And Tim, it wasn't as if the phrase orient or asylum or institution, it wasn't as if these were far off places. These were here in Ohio. Were there some other instances playing into your learning process at this?

Tim: Yeah, I mean, you're exactly right. As I understood asylums and then I was understanding institutions, I did think of them as places that were far off. I didn't think I knew anybody that was there.

I didn't think that anybody was connected to it. And so to know people, that they talked to that had been from there was really, really formative. I started to study. There's a great book by Burton Black called Christmas in Purgatory, and they snuck a camera into an institution up east and started taking pictures of people who lived there.

And he would take pictures of people with disabilities who weren't wearing clothes or were surrounded by feces and urine. You can see 20, 30 human beings in the same room, and it's where they spent their entire lives. I started to realize how it wasn't just ancient history and it was everywhere. I started to understand that it was like all over the country, all over the world.

There were these places where essentially people with disabilities, kids with disabilities, or dropped off by their parents, doctors would say, here you go. This is the best thing. We'll take care of them from here.

And that really made me want to kind of start to learn more and start to understand. What is the history of our programmatic mindsets and our systems mindsets around disability and our society's mindsets?

Robbie: So you're seeing patterns and you're hearing stories as you get to know individuals with disabilities that Star Fire is working with. You are hearing how they may have experienced these people who are in your life now have experienced horrors. Were there any other organizations here in Ohio that you were learning about?

Tim: Yeah. When the Freedom Center opened up here in Cincinnati, they had a documentary that they showed one night, and it was sponsored by the local Hamilton County Developmental Disability Services Department, which it used to be called Hamilton County MRDD. They hosted a film series and I think the film was called Lest We Forget, but there's also a film series, Off the Cement Floor, which you can look up on YouTube (see link on our March 1 event page.)

It's centered around Apple Creek, which was an institution up in Akron. And I remember going to that film series and watching that, and I was struck by how adamant. parents had been that it remained open. Parents were kind of in the position of saying, look, you've taken on some my child's life for 50, 60 years … What are we supposed to do, right? So I was struck by that too. And I was really motivated by how do we help tell a different story. How do we do work that helps people with disabilities and their families start from a different place than.

Nancy: As a parent of someone with a disability, my heart just aches for parents that didn't have the tools or resources to realize there was another way back then.

Tim: Yeah. Nester, were you gonna say something?

Nestor Melnyk: Yeah. A couple things that came to mind. I do remember that film series and going to that film series and. It's also an example of the times that it was an accepted thing, because there were no alternatives. And I think that's why the parents were up in arms is because there was no other alternative and that was just the way things were. And, and it took some brave set of eyes to go in and see what's really happening. To say this is not. But at that time, there was no solution to change and, and we're still struggling with that. Although at least we now have the mindset that that is not the way to do things. It's interesting that you say that things have changed, but in a way they haven't because I can't imagine having my son live in a place like that and people see things and they know that that's wrong.

Cassandra Clement Melnyk: Because what we experience, Nestor and I, is that we really don't have any outside support for our son, and he is. With us. With me, I'm not working because I can't work … because he goes to a day program for a few hours a day, which isn't even like the, maybe the most ideal thing should we be having people with disabilities go to a program?

And just so I can have a chance to do, something without my 24-year-old son, he does go to a day program. It was very hard to find a place that I thought was acceptable for him. And, and luckily in my heart, there is a place that he likes. And I think that people in general in our society look at us and say, ‘Like, wow, they're really doing great.

They are taking care of this, you know, beautiful boy with disabilities. But the truth is it takes its toll on the parents.

Robbie: And, and it's an acknowledgement that it's everyone's responsibility, which is I think what led Tim and Nancy to start visiting some cemeteries. And it also led Tim to start thinking about what is it that we can do as an organization to help raise awareness and to spark connections. That there is a better way and that there is an opportunity for individuals with developmental disabilities to create an identity exclusive of that disability and to build relationships based on common interests. So, Tim, tell us a little bit about, at this point, you've, you've learned about the experiences of individuals in Starfire’s program, which is still at this point a day program, and you've seen some treatment that, in your estimation, is segregation. And so you want to keep pulling at this thread to figure out where it takes you. Is that kind of how you and Bridget went on to Orient?

Tim: Yeah, I mean, I was struck by what Cassandra and Nestor and Nancy just brought up, which is that the system was kind of selling a solution to parents and families that was asking people with disabilities to pay the price.

And I saw myself in those. And those people that were selling those solutions, I saw myself as selling outings and day programs and I started to see that we were of the same form. So I really started to see the same kind of pattern, and I started to see the same dead end happening for the people that were in our programs, and I felt incredibly lonely.

There weren't a lot of people that were like, yeah, let's tear it down and do something more. Because we didn't have big answers. We still don't. So I started studying not just institutions and what had happened then, but I started studying ways forward. There's a great resource for people who wanna learn about this stuff at inclusion.com.

And it was started by people who were also disturbed by institutional [delivery]. They developed a lot of the practices that we lean on the most. So every year they used to host an annual summer conference almost, and they had the theme of their conference was called Truth and Reconciliation, and I had never heard that term before.

The conference was started and parts of it were led by First Nations People of Canada and they were telling stories of how the tribes of the First Nations people of Canada were colonized and destroyed. And what I learned was to start, we have to tell the truth about what happened, and then we have to figure out how to reconcile that.

And I had never heard that term. But during that same conference, the leaders at the conference had some witnesses, two women who had lived at Huron, which is an institution just like Orient that's outside of Toronto. And they told stories that still give me nightmares. They told about how punishment by the institution staff was to force them to lay on the ground and eat worms.

And that punishment might just be for non-compliance or not following their rules. They talked about the pipe room, which was a little closet where all the pipes were, and that's where people were sent as a form of punishment. And they would spend hours in a utility closet surrounded by pipes, and they talked about how the, when they came back to visit, they could see scratch marks in the walls of people who wanted to get out of that closet that were kept.

Probably the thing that was most distressing to me was one of the women talked about how when somebody would die, they would take them and bury them and she used the term out behind the barn, they didn't have any headstones. And I left that conference and I was so moved and disturbed. And again, I couldn't get it outta my head that we're still seeing people who are just as unknown today out of my programs.

So I came back and I started doing a bit of writing, just trying to collect my thoughts around this stuff. And, and one of the things I found important to write about was my feelings around how our programs looked prettier. But had the same form and substance as the institutions, and I wanted to know if there was a place at Orient where people might be buried.

That's when I decided that I might head up to Orient and check it out myself. I had seen Orient before that, but I had never really stepped onto the ground. I had learned from a person with a disability who I had kicked out of our program for bad behavior. I had done that, and after that person left our program, That person ended up getting, arrested for, for a problem that that person had, and that person went to jail for a couple years. And during the time that I’d kicked the person out and the time that person was arrested, I was learning so much about. My own management of our programs was leading people to experiences like getting kicked out and leading people to these social dead ends.

So I was almost filled with (the sense that) I have to make this right. So I kind of got to know the person when they were in jail and I kind of started inviting some other people to know the person in jail as best that I could do at the time. And that person, ironically and sadly, was sent to what's was called the Orient State Correctional Facility. So the former grounds of the institution in Orient is a prison. And so I drove up on the date that person was released from jail and, and picked that person up from Orient, and I could see the old buildings in the background behind a prison.

So I, I had seen Orient, but I had never actually stepped foot on the grounds (of the cemetery.)

Robbie: And the imagery of the prison is not lost on us, and especially on your thought process in terms of what Starfire would look like going forward. So describe the visit to Orient.

Tim: Well, the first time I went up, I asked Bridget (Starfire Community Builder Network Coordinator and Tim’s wife) to go with me. She's my wife and she has worked at Starfire just as long as I have. We picked a day – March 1st. We had the morning free of meetings and we said, let's make our work today to visit the cemetery at Orient. So we hopped in the car and drove. We held hands as we walked across this field toward the headstones.

The field itself kind of has these little divots, and they were kind of like, you know, in the way you'd trip on 'em a little. And as we got closer to the headstones, we noticed that they seemed to all have the same family name. And we were like, wow, this is weird. And we started to discover that the family names were older, so this would be like 1850 or 1860, and we couldn't figure out, well, where is the cemetery for people that both lived there in the 1900’s?

You know? And we started just kind of looking around. We were pretty puzzled and we, we started to notice that the divots themselves were in a grid that we had walked over top of. And as we walked back from the big ornate, well kept headstones, we discovered that each divot was actually a headstone. So we would see number 19, and then next to that was 20, and next to that was 21. We saw numbers up into the nine hundreds. We counted the rows and the, and the columns of divots, and we came to around a thousand, uh, that we could at least know. There were also there. There were, they were in really bad disrepair.

They were sunk, maybe up to five inches into the mud. We'd have to dig it out with the heel of our shoe. There were some as, as we got closer to the parking lot and what I imagine is the newer part of the cemetery, there were some that actually had names and dates on them. These would be people that had passed away in the late seventies.

So I think, at some point people did start to think about maybe, maybe we ought to make sure that people are named rather than just numbered.

Robbie: So you come back to our group and share that information. And I think that led to another trip. And that's what we're gonna talk about on our next podcast, and I would like to hear from Nancy and Cassandra and Nestor, all parents of people with developmental disabilities here on the call today.

When you heard Tim and Bridget's story about going to Orient, how did you feel? Nancy?

Nancy: Heartbroken is the probably most pronounced feeling and immediately following that feeling. I need personally to pay tribute to the souls of the people that were abused there, both in life and how they lived in that institution as well, and how they were disrespected as they laid in rest.

Robbie: Thank you for that. Cassandra?

Cassandra: I felt like when I heard that Tim had gone and that he was gonna go the next year, I felt like I wanted to go because I had a son with a disability. Probably could have gone to live in a place like that. And it made me sad to think that he could live his life without anybody really knowing him and paying attention to him.

So the first year I had my son and my daughter (visit the cemetery.) Troy has a disability and Sophia does not. And we went and experienced it and it really touched all of us. And then after that, we had my husband go with us. So we have been there three years to just remember how things were. And remember the individuals that are buried without anybody to remember.

Nestor: I was compelled to go because of similar reasons. Just just knowing that if these were previous times that Troy would be likely be an institution like that and was overwhelmed just by the sheer magnitude of it, you know, as, as Tim said, there were probably a thousand graves, many unmarked, unnamed.

And certainly all of them until now, forgotten. And I, it also makes me think that even today, even though that, you know, we're trying to make connections for Troy and trying to make sure that he's part of a family and part of a neighborhood and part of a community, if he doesn't have those strong connections, he may have a headstone. He may have a name on it, but how many people will really remember him and go visit?

Robbie: And that is our mission, to spark those connections, to raise awareness, and to stop the patterns. I'd like to end this call with a couple of thoughts.

Every year on March the first, the disability community comes together to remember the victims of filicide. People with disabilities killed by family members.

Vigils are held on this day of morning around the world. It's not just a term that's used with respect to death at the hands of parents, it's caregivers, and legally these cases are categorized as murder or manslaughter or simply homicide, but we have to acknowledge that it’s everyone's responsibility.

From a community perspective, it's everyone's responsibility to be aware, to seek the truth, and to do everything in our power to be as inclusive as possible. On March 1, our Starfire group will visit the cemetery of an area facility and we invite you to listen to our upcoming podcasts.

Also, the resources that Tim shared earlier, we'll post them on our website so that everyone can, can see them, and we'll make sure to, to publish that. Tim, thank you so much for sharing this story of your first visit to Orient. I'm looking forward to talking with all of you next week on our next episode.